"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Monday, April 26, 2010

April 26, 2010

Very early yesterday morning they had to stop Benjamin’s feeds because his belly circumference had increased even more, he was developing a lot of redness below his incision line, and he was so lethargic. They decided to start the antibiotic again in case he had an infection. We spent almost the entire day with him and knew something just wasn’t right. He opened his eyes maybe two or three times for a few seconds. Ryan gave him a manicure and that didn’t even bother him!

An x-ray was ordered as well as an ultrasound and they didn’t show much. There seemed to be a little widening of some areas of the “good intestine” (the part before his ostomy) and a potential kink near where the ostomy comes out of his abdomen. One of the surgical fellows had been dilating the stoma (trying to open it up and stretch it out a bit) a few times a day for the past couple of days, but that wasn’t really doing the trick.

On the way home Ryan and I were wracking our brains trying to figure out what was wrong with him. It’s great when an x-ray or and ultrasound doesn’t show anything alarming, but it’s extremely frustrating when there are no answers. His little tummy just keeps getting bigger and bigger and no one can figure out why. He’s growing so that’s part of it, but it’s still measuring a lot larger than it should.

The ultrasound did show calcifications in his kidneys. We were told this is due to the lasiks he was given to help him pee. So, today he was given another drug to try and clear up the calcifications.

The antibiotics must have helped a lot because when I got there this afternoon he was getting back to his usual feisty self. He actually pulled his feeding tube out of his nose twice! His belly is still measuring the same, but the redness is gone. He’ll be on the antibiotics through the week. They don’t want to start his feeds back up until they notice more output out of the ostomy.

Dr. Zahr, one of Benjamin’s neonatologists from South Shore Hospital, stopped by to see him this afternoon. I was so happy for his visit! Ryan and I are still in awe at how many people truly care about our son and how he’s doing. It’s extremely touching.

Friday, April 23, 2010

April 23, 2010

I can’t wait until we can go a week without being thrown a curveball. Benjamin had his first eye exam yesterday and they found a scratch on his cornea. We were thinking he probably scratched it himself; however, one of the surgical fellows believes it may have happened at some point in the operating room weeks ago. The neonatologist I spoke with today isn’t sure if he will have permanent damage because of it. He’ll have another eye exam next week and hopefully it will look better!

The eye exam was originally done to see if he has retinopathy of prematurity (ROP) which is a disorder of the blood vessels in the retina. His eyes are still too immature to determine if he suffers from this, but because his oxygen level fluctuates so much, he’s vulnerable to getting it. We should know more after next week’s exam.

He seems to be tolerating the feeds fairly well! He’s getting so little right now that it won’t help him gain weight, but it’s lining his belly and getting the top part of his intestines to function properly again. I like how they’re managing the feeds by starting slowly. I’m so paranoid about him getting a repeat of necrotizing enterocolitis (NEC). It’s getting to a point where every time they mention something, like the amount of output from the stoma or the color of his stool, I panic and immediately ask the doctor or nurse at his bedside if they think he has NEC again. I finally told them today to get used to my paranoia because I’m going to be acting like this for a very long time!

In the past few days he’s packed on the ounces. He’s now 2 pounds 7 ounces! Still hasn’t made much of an impact on his oxygen saturation leveling off, but hopefully over the next few weeks his desats won’t be as extreme and they’ll become less frequent.

As a side note, Ryan and I had a conference call yesterday with one of the surgeons that performed my laser ablation procedure in Providence to discuss the findings from the examination of my placenta. It was even worse than we originally thought. Unbeknownst at the time, I also had a condition called velamentous insertion where both umbilical cords were not directly rooted to the placenta, just the membranes. The vessels could have ruptured at any time, and I would have lost both of my babies in utero. Benjamin and I are extremely lucky.

Tuesday, April 20, 2010

April 20, 2010

Benjamin is a proud member of the Kilo Club (he weighs at least 1000 grams)! We were presented with an “award” today with his hand and foot prints on it. It’s absolutely adorable!

He had a dye study done this afternoon to see if there were any strictures or obstructions in the top part of his intestine (before the ostomy). We’ll get the official results tomorrow, but they will most likely start his feeds very soon. He’s still at risk for NEC which make us so nervous, but the longer they hold off the breastmilk, the less likely his intestines will function normally. The next few weeks are going to be stressful and difficult for us and for him as he’ll most likely tolerate some feeds, but not others. He’ll start off with only a few drops and they’ll gradually increase the amount if all goes well. We still don’t know how much “good” intestine he has left below the ostomy, but that dye study won’t be done for awhile.

The desats haven't lessened, and they’ll probably continue for another few weeks if not longer. We hope that as he grows, and his lungs get bigger, he’ll be able to regulate and maintain his oxygen levels. We’ve noticed a few more apnea spells, but he seems to be able to bring his heart rate back up on his own and fairly quickly.

Since he’s been off the Fentanyl, we’ve noticed he’s become extremely sensitive to sound again. We need to whisper when we’re in front of his isolette or else he’ll become agitated. There’s a NICU nurse who is an absolute sweetheart, but has a boisterous voice. She was talking to us the other day and Benjamin started to squirm and his vitals were all over the place. Well, we peeked into his isolette and his little hand was covering his ear. We got a kick out of that! Thankfully, there aren’t many babies in there right now so Benjamin has a Bay all to himself and he’s had peaceful and quiet nights.

Saturday, April 17, 2010

April 17, 2010

Benjamin started the Omegaven on Thursday because his bilirubin levels were starting to rise and cause injury to his liver. Basically the Omegaven takes the place of the Intralipid he was getting. It’s a fat emulsion comprised of fish oils and it is administered the exact same way; through his central line. Although he hasn’t put on anymore weight since our last update, he should continue to grow on this, and after a few weeks we should expect to see his bilirubin levels begin to return to normal.

Because Benjamin started this new “investigational” lipid, he will not be able to return to the South Shore NICU. It costs $50 to $100 a bottle for this stuff and Children’s Hospital will cover whatever isn’t covered by insurance. Unfortunately, we were told South Shore will not. We had such high hopes of returning to the wonderful doctors and nurses we grew to love there! But, while Benjamin will most likely be part of this study for a long time (possibly years), Children’s is the best place for him.

He will finish his antibiotics today. He was on them for three weeks because of his intestinal surgery. Infection can be a common occurrence among extreme preemies that require long stays in the NICU; therefore, his blood will be continuously tested while he remains there.

I was very worried on Wed. when I heard he dropped his oxygen saturation into the 20s, started to turn blue and needed to be bagged. But, although his desats have continued, I am happy to report that he’s been doing much better over the past couple of days. He’s drifting down into the 60s and 70s, but for the most part has been able to bring himself back up with little intervention (maybe an extra breath or two of oxygen). The pulmonary neonatologist is coming back on Monday and I’m anxious to talk to him. Two weeks ago, he was thinking Benjamin could move to the CPAP, but held off because he didn’t want more trauma to his belly. Now that he’s on higher vent settings than he was two weeks ago, I’m wondering what Dr. Rhein’s thoughts are. It doesn’t seem like Benjamin will be moved to the CPAP or high flow nasal canula anytime soon, but we could be pleasantly surprised!

Around 8:30 last night he was wide awake. I got to change a diaper and Ryan and I looked into his eyes and talked to him for at least half an hour. Normally he’s been having his caffeine dose around 8 pm so we were shocked when we found out he hadn’t had it yet and was this alert. We cherish these times since his isolette is usually covered and we can’t see much of him.

Tuesday, April 13, 2010

April 13, 2010

Our little guy has surpassed 2 pounds! As of today, he weighed 2 lbs. 1 oz. and he’s grown 1.1 inches since he was born (he’s now 13.1 inches long). The PN he’s on is doing the trick; however, his bilirubin level is increasing… not a good thing. His nurse talked to us tonight about starting him on a new omega that’s in a trial phase. Apparently a surgeon at Children’s Hospital has been experimenting with it. We were told that it’s been quite effective and long term use shows no signs of damage to the liver; babies are actually coming to Children’s from all over the country just to get it. I’ll talk to the doctor tomorrow and most likely sign the consent for him to enroll in the study as soon as possible.

His desats (drops in his oxygen saturation) have continued; some of which are really bad. I guess all micro preemies (babies born before 26 weeks gestation) have this problem, but he’s dropping his levels too frequently. To rule out infection as a contributor, his blood has been tested. We’ll have the final culture results by the morning, but so far it’s been negative. He’s also getting a dose of caffeine every night at 8:00 to try and minimize the desats.

Dr. Hansen detected a faint heart murmur when she was rounding yesterday. According to her, it’s nothing to be concerned with at the moment. Hopefully it will go away as quickly as it developed.

When I called in for an update around 4 am this morning, his nurse said he had been crying. Because he has the vent tube down his throat and between his vocal cords, you can’t hear him cry. All you see is his little face scrunch up and his mouth open wide… it’s so heartbreaking! He was taken off the Fentanyl drip yesterday afternoon and his nurse said he started showing withdrawal signs last night and early this morning. Once she gave him a Fentanyl bolus he was a much calmer baby. He’ll get a few boluses a day for a bit and then he should be able to kick the habit!

As Benjamin has stolen our hearts, he’s stolen his nurses’ hearts. As hard as it is for us to leave him at night, we know he's loved and in good hands.

Sunday, April 11, 2010

April 11, 2010

Benjamin is one month old today! I must say, as he’s getting bigger he’s starting to look a lot like his older sister. He’s weighing in at 850 grams which equates to 1 lb. 14 oz. Besides a little swelling in his tummy, this should be his true weight. The nutrition he’s been getting has been bumped up a bit because his growth has been so slow. He’s going to be on perinatal nutrition for months (even when he does start feeding) and he has to have his bilirubin levels monitored closely because it can damage his liver. He’ll be getting another blood transfusion, but other than that, he should have somewhat of a quiet day.

I did get to Kangaroo hold him last night! It was both a wonderful experience and yet a bit stressful. It was great to finally bond with him, but it was hard for me to relax because he kept desating (his oxygen level would drop).

We had our first family meeting at Children’s Friday afternoon to go over the results of Benjamin’s MRI. Apparently the images show extensive brain damage on both sides of the back of his brain, but we were told we will have to wait until he gets older to determine exactly what this means. We didn’t really get any answers. When I asked if my son might not be able to ever walk or talk, we were only told “it’s a great possibility.” Dr. Hansen said that we would probably be dealing with vision problems as well as issues with motor skills, but we must wait, wait, wait. After this unsettling consult, Ryan and I decided we can’t think about what may or may not be, we have to focus on the issues at hand (Benjamin’s stomach problems, his lung disease and his slow growth). We went back into the NICU and he was bright eyed and alert and we were able to hold his little hands.

He’s down to 1 mcg of the Fentanyl and they may take him off the drip completely today. He was showing some signs of withdrawal Thursday night and early Friday morning, but now he seems to have adjusted quite well. We thought about changing his nickname to “Fent” because he’s been on the narcotic for a month now!

Benjamin continues to amaze us and we couldn’t be more proud of him. We are so in love with him, and although this wasn’t the path we would have chosen for both of our boys, we cherish the little miracle we’ve been given. A friend of ours shared the following poem with us and I think it explains in a nice way a few of the emotions we’ve been feeling and what our future may hold.

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
© 1987, by Emily Perl Kingsley. All rights reserved.

Wednesday, April 7, 2010

April 7, 2010

Today was another day where not much was happening in Benjamin's little world. No x-rays, no MRI and limited blood draws. He was dropped down to 1.5 mcg of fentanyl and so far doesn't seem agitated so he's not showing any signs of withdrawal. He's still very sleepy and continues to spell frequently and have an extreme brady here and there. It's hard not to focus on the monitor when his heart rate starts plummeting or his oxygen saturation drops. The nurses keep telling us that the monitor is not a tv screen, but you just can't help staring at it especially when it starts beeping which happens pretty much every minute.

I'm hoping I'll get to Kangaroo hold with him soon. We were so close at South Shore Hospital until he got really sick and now they want his tummy to heal a little more before resting against me. I just want to hold my little man! I know it's crazy, but sometimes I think he's not really sure who I am anymore because we haven't been able to connect since he's been out of utero.

Jadyn came to see him today for the second time. His nurse was so nice and lowered his isolette which gave her a better view of her little brother. She thought that was very cool and it's adorable to watch her talk to him!

Sunday, April 4, 2010

April 4, 2010

Benjamin had a couple of drugged up lazy days which he so needed after his surgery. He’s now down to 3 mcg of fentanyl (from 4.5). He’s been having more spells that alarm us, but we were told this would happen because he’s so premature. His blood levels were also a bit off this morning so he needed another transfusion. We can’t even keep count as to how many blood transfusions he’s had since he was born. He’s also on a powerful antibiotic as well as perinatal nutrition. He’s weighing in at 1 pound 12 ounces, but this isn’t accurate because it’s mostly fluid weight that he should eventually lose.

Thursday, April 1, 2010

April 1, 2010

Early morning workups showed some increased blood in Benjamin’s lungs, a bluish looking belly and inconsistent heart rate and respiratory readings. A few Dr’s thought this may be a result of his PDA duct re-opening. Sure enough an ultrasound at 9am confirmed this. PDA ligation surgery was then scheduled for 3pm. This was going to be his 3rd surgery in almost a week. We were told this was a routine surgery at Children’s, but we were still scared because our baby had already been through so much.